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Author
Topic: Has HIV Made You Reclusive? (Read 57357 times)

I've got to toss this out to the population at large here because it's been weighing on me for sometime. I've become so much more withdrawn in the years since diagnosis - and this is long past meds adjustment and recovery. I can understand my initial withdrawal post diagnosis due to sickness and shell shock, but it seems to me that it would have worn off more by now. It's much more of a "social panic" type thing, and I know that it has cost me in the friendship and other relationship department.

I'm wondering if it is some sort of PTSD or simply a return to childhood shyness or what. I get panicked about meeting - or sometimes even just speaking to - people...even people that I know and WANT to interact with. Most times, once I get around them I am fine...but then find myself anxious about calling them or seeing them yet again the very next time.

I was a painfully sky kid who overcame it as an adult, but I act very much the same these days - until I get myself in the midst of a social situation. Sometimes, having been diagnosed with BPMD, the manic side can take over and make me a temporary butterfly. I then revert back to hermit mode, though...even though I don't necessarily feel depressed.

There are people who have been trying to make contact with me - some of them right here on this forum - that I felt panicked about for no damn good reason. I know this on a rational level...yet still lock into that same pattern.

Have others here felt anything like this at all? Do you attribute it mostly to a shyness or BPMD thing, or do you see it as some sort of HIV initiated thing or what?

Thanks for posting this. In a way I am wondering the same thing. In my case I just thought that maybe it was because I was something of a recluse before being dxd (although obviously not enough of a recluse LOL). I am anxious to hear what others think...

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Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

I've become more reclusive, but I'm still trying to deal with some of the physical after effects of my diagnosis. Not to mention one of my favorite activities pre-diagnosis was binge drinking which now isn't such a great idea because I need my liver to be fine to handle the meds that I'll be pouring through it for hopefully the next 20-30 years.

I would not say that I am reclusive as a result of being HIV positive. The fact that I relocated 500 miles from where I was living last year does throw off my ability to see my close friends as often as I would like to. I do not get out and about as much here as I did when I lived alone and I do not entertain guests here as often as I did then either. The social scene is much different here and I really dont have the desire to date as much. I would say that being HIV positive has changed that aspect of my social life.

I'm wondering if it is some sort of PTSD or simply a return to childhood shyness or what. I get panicked about meeting - or sometimes even just speaking to - people...even people that I know and WANT to interact with. Most times, once I get around them I am fine...but then find myself anxious about calling them or seeing them yet again the very next time.

I was a painfully sky kid who overcame it as an adult, but I act very much the same these days - until I get myself in the midst of a social situation. Sometimes, having been diagnosed with BPMD, the manic side can take over and make me a temporary butterfly. I then revert back to hermit mode, though...even though I don't necessarily feel depressed.

How strange that I would find this post today, as I have been working on the very same issue. Based on what you describe and my own personal experience, I would say that all the issues you mention, play a part. While I have never been really shy, I am very reserved until I get to know someone and I hate going to social gatherings, but I do fine when I am there. I used to wonder why I felt this way, but now I understand why and so let me just throw this out.

Might your being reclusive, be a result of your avoiding social situations, because you were shy as a kid? Even though you know "intellectually" that you are no longer shy, you may have become predisposed or "hard wired" as a kid, to avoid gatherings, because you were shy and you did not like how it made you feel. I'm going through this right now, by looking at my own "hard wiring", with all the conclusions and projections that it involves. It's very hard to put into a few words, but think of it as you don't want to go out, because something about that, makes you very anxious and that you could be falling back on childhood feelings, that told you, to be safe, you stay alone or avoid crowds, maybe even because you felt there was something "wrong" with being shy.

If I make any sense, you can expand that to almost anything and it can be very hard to separate what you "feel" vs what is "real". Have you tried therapy? If not, I highly recommend it, as we share certain issues, like PTSD and you would be amazed at the interconnections that exist, from one part of our experience to another. I think that by your asking these questions, you are ready to answer them, but I doubt you can do this alone.

Joe, you make a lot of sense. And I've sort of been wondering this about myself...if maybe the time out of the loop from society during my initial sickness and recovery caused my to "fall out of practice" in social situations.

Joe, you make a lot of sense. And I've sort of been wondering this about myself...if maybe the time out of the loop from society during my initial sickness and recovery caused my to "fall out of practice" in social situations.

Let me add this one as well, as it applies to me. I will avoid going out, because I am afraid of making a new friend, who will somehow become sick and die, abandoning me once again. It applies to my PTSD, I'm so afraid to meet too many people, for fear they will die. Rational thought? Hardly, but it used to "feel" so right to me. I overcame many of these feelings, by training myself to "short circuit" those thoughts, but to also understand how losing hundreds of folks, can "hard wire" you in not very useful ways.

That's why I suggested that you may have multiple issues at play here, with each one partially reinforcing the others and maybe you can identify some "core" issues that will affect all areas. If you go the therapy route, find one who challenges you and will not let you turn away from your real pain. Trust me, you will never conquer your fears, until you look them squarely in the eye. Most of all, realize that you can do this and so get off your ass and do something about it.

Personally, I think you might be too hard on yourself and I sense some feelings regarding self-worth and maybe even your right to be happy. Sometimes we can be our own worst enemy, but in the end, if you don't like how you feel, then find out why and go from there.

@ thunter34 ....NO it has not, I got this when I was 32, I'm almost 55 now, I lost my Career due to a HIV related health issues that I still have today, but to say THIS has made me Reclusive again NO.....HIV/AIDS is only a virus that is controlled by medication I have to take daily, it doesn't define who I'm or make me want to be Reclusive

« Last Edit: February 15, 2011, 07:07:14 PM by denb45 »

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

This thread is making me take a closer look at myself and I have learned something from everything posted here so far. In one minute I was working, had social acquaintances at work and outside of work and then when first dxd, I stayed home, literally, for fear of infection. (My CD-4 count was 8 and VL was 500,000) When I went to the store or out to eat (twice in 5 months) I wore a mask to help reduce my chances of catching something.

My normal routine became something quite different and now, like others have said, this is the new norm. I don't wear the masks anymore and am not completely a germ-o-phobe like I was for awhile and am starting to go out more. Once to a bar with my partner for some drinks and out for dinner occasionally or shopping. I am not as reclusive as I was when first dxd so I guess I am getting back to normal...whatever that is.

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Diagnosed in May of 2010 with teh AIDS.

PCP Pneumonia . CD4 8 . VL 500,000

TRIUMEQ - VALTREX - FLUOXETINE - FENOFIBRATE - PRAVASTATIN - CIALIS

Numbers consistent since 12/2010 - VL has remained undetectable and CD4 is anywhere from 275-325

Yes.I've mentioned before on this forum that it seems to me as though I am more introverted now than ever. The Myers Briggs personality assessment differentiates people in four different personality categories. One of them is introvert/extrovert. I was introverted before, and I think more so now. But that category simply indicates where you get your energy from. Intoverts prefer to recharge alone. Extroverts get their energy from being around people. So I have a theory:I know I feel like I need my 8 hours sleep now more than ever=I need more rest (recharging)= I need more alone time.If my hypothesis has some truth to it, I wonder if some people find they need to be around other people more than ever. I wonder if we are just hearing from the "introverts", like me?Grant it- I am just discussing this from an energy and recharging perspective, and not at all considering the other social interaction aspects of the virus.

Yes, I have become more withdrawn. I go to the occasional social fundraisers I was previously involved with, but find no joy in going out. I know I need to get the social interaction, and I'd love to meet that special someone, but can't seem to find the energy or the desire to go out. It may be a degree of self-pity, or PTSD -- I am just under a year of being pos and have had many issues to deal with. Being more of a recluse has made it easier for me in some ways, but also harder since my self esteem has bottomed out.

I wouldn't say that I've become reclusive - I do spend more time at home and more time with myself -but that is because I enjoy the relaxation and I enjoy my own company -especially, after waking up at 6 am Mon-Fri for work and getting home around 5:30 each night, after being around people all day and away from home, I like laying on the couch and having quiet time.

I still get out - but I definitely don't "hoe" around like I used to -I still enjoy my drinking - but don't do it half as often as I used to -

I would attribute my desire for solitude as part of being HIV positive and not having as much staying power or tolerance for being around others 24/7 and also part of getting older and having more appreciation for the simpler things in life.

I keep a small circle of friends and value the time that I do choose to spend with them and they with me. When I do go out, I enjoy it more because I am not constantly running around.

I have become more introverted... I smile an occassionaly go out with friends but dating has been a nightmare. Its my mental hangup as well as that i am not ready to disclose.. I live in a state were disclosure is a requirement.. I will eventually disclose but i prefer knowing and trusting the person

I don't think HIV has made me more reclusive. I've always had a tendency to be introverted. And I can switch into a mildly extroverted mode when I need to, though I never actually quite get the connecting or belonging or fitting in. I can't say that's HIV related, but that's an interesting question. I think the answer depends on each individual's particular experience with HIV: access to a support system, friends, family, finances, career, access to healthcare, effectiveness and side-effects of medication, etc. Personally, more and more, I've learned that the problems that I thought were related to HIV (isolation, depression, sexual hang-ups) go beyond that. I also identify with what Assurbanipal says about life's threads being hard to disentangle, so it is difficult to identify causes sometimes.

Regards,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Most definitely. I have not made any new friends in years. Granted I have been in school full time the last few years but I don't let new people I meet into my life really. I need to change that. I am definitely a homebody. I never use to be. Kind of sad when you think about it. It can be isolating. I need to make a real effort this year to get out, meet people, and do things.

I'm not positive (I'm on PEP, that's why I'm here). I thought I should say that first as a kind of disclaimer. I can't relate to that experience. I have bipolar disorder too and in the past was diagnosed as having social anxiety disorder.

I overcame the shyness as well but then became reclusive due to paranoia and it came back. I think you just become unused to social interaction if you shut yourself away. For me I reckon low self-esteem plays into it as well. It's hard to put yourself out their if you don't feel like you're worth knowing.

While many Forums members likely appreciate your intentions, please understand that all forums -- with the exception of "Am I Infected?" and "Someone I Care About Has HIV" forums -- are only for people who are living with HIV. Thanks for understanding.

I have become a total recluse now that I'm poz, thankfully my kitteh is good company :-)

J

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"The Bible contains 6 admonishments to homosexuals and 362 admonishments to heterosexuals. That doesn`t mean that God doesn`t love heterosexuals. It`s just that they need more supervision." -- Lynn Lavne

I thought a lot about this topic when I read it this morning: I know that I'm more more likely to isolate, avoid things I consider unpleasant and dissociate, but these are all behaviors with roots that predate my infection. Is it a matter of aging (I'm 51) and hardening of bad old habits, or have I internalized some part of the AIDSphobia that we all live with, despite brave words to the contrary? It's hard to say.

I do know that I have no choice but work right now, and that my work brings me into a very social setting between 5-7 nights per week; at least while I'm working, I have to be "on" and cannot isolate for long. Part of my work persona involves a mask, of course, and it's one that I use liberally to hide behind. But the fact of the matter is that I'm out there, doing it, despite occasional jitters/digestive issues/toilet terrors because I need it, both so I can eat and pay my rent, but also because without it I'd turn into a virtual hermit.

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Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Yes-I have become more reclusive. I am still somewhat an extrovert when presented with the opportunity. However. my primary emphasis is now on keeping healthy, my consulting business, maintaining my home, and playing with my pug Ya-Ya. I guess that you could say that now versus prior the HIV/AIDS diagnosis I amo now focused on a healthy balance whereas before I always felt like I had to be "on the road". This is so interesting how it seems that this has effected us all in very similar ways.

I have one best friend that I do things with. I think I've become more reclusive since being older. And I'm naturally suspicious of people, so that could have something to do with it. I still go to functions sometimes, or out to eat, a casino etc., but I'm by no means the social butterfly I was when I was younger. Things have changed, like I used to party all the time, now I don't. I used to go out to get screwed all the time, now I don't. Stuff like that. I also have grandkids, and just the thought of having them calms me down sometimes. I wouldn't want to be a negative influence running around getting toasted and screwed. I have a group of friends in a 12-step program I've been hanging with for years, and sometimes go to those kinds of functions. But otherwise, I stay home. Like tonight, I'm going to probably watch America's Most Wanted and eat Cheese-its. Good times, aye.

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

"Thunter, et alll"Having the hiv virus in our bodys is a game changer, FULL STOP! There is no cure, you cannot give it back, it's yours, forever. Now thats life changing. How you handle it, is going to be different from the guy down the block.

Some say it's fine for Positive men to have sex with Negative men. Safe sex.There is an array of what is said to be safe, and what is not.

It is going to be personal for each of us. Some of us will choose abstinance, once we are diagnosed positive. For some of us, the thought of giving this virus to someone else, is just too much to bear, so we begin to become reclusive. I fit into that club. I have for so many years, I think perhaps it's time I changed my outlook. I am not looking for a sexuall partner so much as I simply need a human touch. It's been over 20 years since I have felt the loveing touch of anouther human being, I believe I have cheated myself out of a great deal of happyness.

I am going to be leaving myself open, to the right situation, should it present itself. I am finaly starting to realize that I deserve as much love as the next person. Hiv steals so much. It allmost took my heart, as well as my health.Bertram xo

It definitely made me more reclusive in the first few months following diagnosis, mainly because I was too busy processing this new aspect of my life.

Then a year or so later when I started having a lot of problems with hiv-related diarrhea, I became very reclusive mainly because it's just too damn embarrassing to shit yourself in public - and yes, it happened to me several times. Until I got the dire-rear under control, I only left the house when I needed to go buy groceries or go to a doctor appointment.

Now that my butt emissions are under control and no longer involuntary, I'm not reclusive in the least. Everyone in my social circles knows my hiv status and it's simply not a problem. In fact, if I go missing for a few days - sometimes I just need "me" time - someone will usually ring me to see what's up. Especially after last October when I had a high fever (due to an undiagnosed kidney infection) and was totally out of it for a few days. When my mates found out how sick I was they all vowed to check on me if I'm missing for more than two days. At the time in October they thought I was just having an extended time out and left me to it, and they were mortified to find out I'd been too sick and delirious to actually realise just how sick I was. Ain't high fevers fun? Not.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

It definitely made me more reclusive in the first few months following diagnosis, mainly because I was too busy processing this new aspect of my life.

Then a year or so later when I started having a lot of problems with hiv-related diarrhea, I became very reclusive mainly because it's just too damn embarrassing to shit yourself in public - and yes, it happened to me several times. Until I got the dire-rear under control, I only left the house when I needed to go buy groceries or go to a doctor appointment.

A lot of this is what I now think triggered my own reclusion. There was not only the initial psychological / emotional jolt, but real physical issues that yanked me completely out of all social circles. I had full body rashes, dire-rear and even hair falliing out in clumps thanks to the syphilis kicker served with the HIV. And then months of getting over meds adjustment. After that, I had ballooned up by nearly 40 lbs - so I admittedly stayed scarce because I just didn't feel fabulous enough anymore.

Eventually, all that settled down - but by then my inate reclusive nature returned to the fore. After soaking on this thread for awhile now, I think that is the main thing that happened: the reclusiveness wasn't really the exception, it was the genereal rule of me. I had worked my way out of it over the years, but getting sick gave that nature time to settle back in again.

This, I suppose, is actually good news - because it simply means that if I want to reemerge, I can. HIV / AIDS hasn't really permanently changed me in any way that makes social involvement possible...it's mostly just my same old same old temperament.

If I want it to change, I just need to get off my duff and make it happen.

I don’t know if it has made me more reclusive since like many others, I was shy and depressive before diagnosis. One would think I should be used to it all after nearly two decades, but it only takes an encounter with an old acquaintance who asks “Oh! Are you all right? What happened to you? Are you SICK or something (hint hint hint)?”…and then I realize my lipo issues betray me again.

I’ve always been a bit jealous of those who are able to make friends easily. I have my strengths, but this isn’t one of them. Dating was hard before diagnosis and it is practically painful now with so much “Uh, thanks but you take care of yourself…I”ll call you sometime” etc.

On the other hand since I wasn’t gregarious to start with, I am not in the position to miss being that way!

I have been struggling with this topic for a long time... I'm trying at this point to push myself to find ways to improve the situation but... I'd have to give a resounding YES, HIV has had a hugely negative impact on my social life. For one thing, having been dx'd in Feb 92, a whole lot of my old friends (and my former partner) are simply no longer around. For another, SO damn much of gay social life is centered around the bar/club scene... I no longer drink (liver issues due to past use of ddi/d4t) or smoke, so hanging out in bars is a lot less appealing to me. Also, due to facial & somatic lipoatrophy, I constantly feel "marked" (I've overheard some rather unkind remarks about having an "AIDS face") especially in a culture that's so focused on physique and appearance. I won't even get into the online sites where so many profiles say "Negative only" or "D&D free" or simply "clean only". All of this is only compounded by the fact that I am on disability and thus do not have work contacts or schedule that would bring me into daily contact w/others. As I said, I've really been trying to work on this issue lately, but it sure ain't easy.

Mmmikey , honey I wouldn't worry too much about it, shit, I know I look like death warmed over, but I don't care as long as I'm healthy, that is really all that matters to me @ 55 yrs old all of the shit I've done is all past-tense to me

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"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Most definitely!, before I was HIV+ I was hardly at home.HIV caused me a lot of gastro issues, and the last thing I wanted to be was far away from a restroom, or having to explain why I kept running to the RR to people, so I chose to be reclusive.I just recently started getting out some, but yeah I feel very awkward when it comes to meeting new people, and or interacting.I chat with a few co-workers, but it's not exactly what I'd call socializing.

If I do not have time to myself to read , I think I would have many more difficulties to deal with . Its hard to get the balance right as I can also experience loneliness even when I have made sure that I am alone.

Some off this I will argue is age appropriate, and when I imagine how life might be had my late partner and I not become infected it is a more socialable active life that emerges

Energy levels play a part, Financial restraints also, it is what it is, and on the whole I am determined to make the most off the life i have but that life requires solitude .t

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Yes. I have always had social anxiety and as the years go on I tend to be more of a home body. I stopped drinking (for the most part) and dextoxed from pain pills after years on them in July. I realize how much I used my vices to be able to go out and be social. Being positive has not helped my mental issues.

1. Worrying about my employment. The meds slow me down so I have to double down on my dedication to my job... which means much longer hours.

2. I absolutely cannot drink alcohol with these meds. Meds and alcohol just don't mix for me. That's probably a good thing, but it put the nail in the coffin for any night life involving alcohol.

3. Meds side effects. Among others with HIV these wouldn't be an issue, but it's a wall between someone that's HIV- and someone that's HIV+: - It's hard to predict how I will feel day to day so I don't like to make plans and then have to cancel. - My brain is sometimes so foggy from a Sustiva hangover, that I feel like I'm conversationally deficient. - Sustiva increases anxiety. That's one of its documented side-effects and it varies with me. But if I start feeling anxious, it often seems to multiply. The only way I can control it is with some really hard aerobic exercise.

4. Age. Since I may live long enough to retire, I need to save $$$ for retirement (hopefully early retirement). Right now, saving money is ranked among the most important things in my near-term life. I'm less prone to $75+ meals at restaurants, $100 nights out at the clubs, vacation trips, etc., that I once did. You might say I've become an old tight wad !!

Yes I used to be very social and a bit of an extravert. Kinda wild and out going but more and more I'd rather stay in. I feel more secure when I'm out with my boyfriend and will feel insecure when out by myself. I feel my appearance is that of an HIV patient, I feel everyone that looks at me knows.

I'm more reclusive, although I think some of that is because I don't have the friends here that I did before I moved away. I have a small circle of friends that I see and don't venture far from them. That is unusual for me, I'm normally the person that doesn't care about going out by myself and now I find that it can be "scary" at times. I do think the HIV/AIDS is part of it.

Michelle

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How to handle stress like a dog:If you can't eat it or play with it.....then pee on it and walk away

i guess i can blame hiv for this..i sort of blame myselffor letting it happen.i was really good when i was in a relationship for a while untilafter i split up with her. for a good period of time i tried really hard to find someone new.i got discouraged and now, i don't even care to bother anymore.

getting rejected never bothered me in the past until i had hiv.it planted inside of me a seed of doubt of myself,i never had before.

now i figure if i'm ever going to find love and companionship againi will just have to buy another dog

I also used to be a real extrovert but have now become reclusive. Part of that, though, is that my health failed and then I had to stop working, and now I have no money. I've also moved into my own place, which is a good thing, but means I'm even less minded to go out now.

I think there's a part of me that now HATES my extroverted side as, somewhere in mind, I feel that if it wasn't for that part of my personality I wouldn't have become infected with HIV in the first place. I think I've come to associate gay clubs/bars with negative things, like self-destructiveness, as well as a sense of feeling that I will be judged harshly for my HIV status (were it known), which makes the gay scene seem far more hostile than I ever used to experience it.

Before I was diagnosed the gay clubs and bars used to be my playground, but now, in as much as the dark thoughts that run through my mind whenever I'm there, it feels more like a battleground, and I look forward to the evening being over so I can snuggle into the safety of my own home and quiet solitude.

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''Poor is the man whose pleasures depend on the permission of another.''

Being poz was NEVER an issue for me for MANY years. I didn't care and assumed others wouldn't either. Over the years I have learned that others DO CARE!!!!! They DO CARE to the point of being out right rude, judgemental and hateful so for about the past 6 months I just contend myself with my dogs and the joy they bring me and have pretty much py people aside.

i used to be the life and sole of the party, up for any party or rave when i wasnt working, then i lost my job as i was having to much abscens becoz of the awful viral infections i kept getting and my work ' couldnt accomodate my needs as i would need to much time off which wasnt gud for the company ' this really kncoked my confidence in people and made me realise just how much stigma and ignorance some people still have regarding HIV which is ridiculous when you think about it, i have a few really gud mates but since finding out i was positive it made me realise jus who they were and the hanger ons and users who jus want a party and to get high all the time, its sad really that some people are so self indulgent and self absorbed but its one of lifes many harsh lessons i suppose, i have been bed bound for majority of the last year adn this made me find out who my true friends were, the ones that would come and help me change my bedding and cook meals for me and help me take meds, altho i hate realying on them most of the time they are the true friends and i would do no less ofr them if needed, but i still dont tend to want to go out clubbing and socialising that much anymore becoz im feeling to ill most of the time plus i dont wanna be around people that are users and hangers on and since getting poorly i have been iagnosed with depression which is just an added to my feeling down and crappy, and the meds for depression are awful and have dodgy side effects like excessive weight gain and funnily enuff makin me feel more depressed, im starting anti virals meds next week and hope that once they astart working and the side effects wear off i can concentrate on finding a new job, getting my old self back and goin out with friendsim sure life will get better its just these points in life that are crappy but cant be forever surely not

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Until the rainbow burns the stars out of the skyUntil the ocean covers every mountain highUntil the day that eight times eight times eight is fourUntil the day that it's the day that I'm no more Did you know that true love asks for nothingTheir acceptance is the way we payDid you know that life has given love a guarenteeThat last through foreverAnother day